Manual, Please!

Today I took Jenna to the eye doctor and returned home exhausted. Little miss boss did not like being there and had a major meltdown in the middle of her TWO AND A HALF HOUR LONG appointment. I'm beginning to wonder if I can get through these alone anymore; she's getting a lot bigger and a lot tougher.

I came straight home and started to google blogs of other stressed-out parents with special needs children; I read what they had to say and felt somewhat comforted.

Jenna's world is changing lately. I think it's becoming more confusing and emotionally difficult for her, which makes me feel very helpless. A wise friend once said to me, "at least she doesn't know she's different." Maybe not then, but that's where the change is occurring.

I think she knows.

And I'm sure it bothers her.

For example, when we came out to Texas, I was really excited about respite care opportunities so we could do things with Hannah that Jenna would not enjoy while Jenna went to play. There's a great special needs respite care organization here, but the problem is this: There are usually only other special needs children there and Jenna won't really play with them. However, when we take her with us out shopping, or to a restaurant, Jenna goes up to the kids we come in contact with and tries to talk to them. If they ignore her or tell her to go away (which breaks my heart) she starts to cry, which often escalates into a full-blown, drop to the ground and scream at the top of your lungs meltdown. She's been known to ask, "why you be mean to me?" which makes me think she's aware she's different, but strives to "fit in" despite that, even though she asks the same questions over and over again or says things that just don't make any sense. She's socializing the only way she knows how.

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When I think of this change from blissfully ignorant to oh-so-aware, I'm reminded of her seizures. How? Well, some look much worse than others and are much harder on her body, but she is unaware of them as they happen, so they look like they hurt but they're mostly just hard for us to watch and for her to recover from. With other seizures, she's fully aware, crying and asking for help. These might not be as physically threatening, but they're painful and emotionally difficult for her and for us. Same with her new desire to have friends without disabilities - it's as if she feels she needs them so they can carry her through whatever it is they do together while they're playing because she knows she can't do it alone. She simply doesn't know how. But she's aware she's different and it bothers her.

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And it's just so hard to know what to do for her.

*

Her birthday outing went awry for the very same reasons mentioned above. She tried to play with two little girls and they shied away from her and eventually, they left the play area. This really, really hurt her feelings. It's like she knew they didn't want to play with her. She cried and cried, was totally inconsolable no matter what we tried or how goofy we got in our desperate attempts to make her smile, and Craig ended up carrying her out of the restaurant - still shoeless - because she was so hysterical. :(

So we ended up eating her cupcakes at home the next day. Much, much better idea.

Mmm... yummy!

We sang her "Happy Birthday" and helped her blow out the candles. She seemed okay with that, although she got nervous with us all singing at once -- hey, I'll take that over a meltdown any day! But it makes me wonder what we're supposed to do next year. Do we risk the let-down of another party-gone-wrong? She obviously doesn't enjoy herself when that happens. Our goal was to keep it simple this year, but apparantly simple wasn't enough; home ended up being the best option. Oh, well. We tried.

I guess time will tell. I wish we had a manual for this stuff.

Meanwhile, Hannah enjoyed Jenna's birthday very much.

Particularly the cupcakes.

:)

And Cohen opted to hang out with some buddies.

How cute is this?

Merry Christmas...

Christmas morning was equally wonderful. Each child enjoyed it in his or her own way.

Hannah loved unwrapping gifts...


And check out this shirt my parents sent for her...

This is so funny and so true! Case in point: she refused to hold the shirt up for me and is shaking her head "no" at me for asking if she'd smile for the camera.

Jenna loved the ladder climbing contraption, the trampoline (wheee!!), and the colorful therapy stepping stones. Thank you to Grandmas and Grandpas for your contributions!

And Cohen slept through it all...

...because he was up till 2am too! :)

And here's one more picture of the girls enjoying their new toy, with Daddy standing by to prevent any injuries from falling...

All in all, it was another great Christmas! And Jenna was more involved than ever, which made us very, very happy. The only bummer this year was we skipped Christmas Eve church service. It has been very difficult with the three kids, and the church we'd go to gets very crowded. Very hard with a little baby and a child who gets anxiety in crowds. We will go again soon...

For all of you back home and our family far away, we miss you all very much! Hope you all had a very merry holiday season! Wishing you a happy new year too!

'Twas the Night Before Christmas...

We had a beautiful Christmas Eve. It was a little bittersweet because we were without many of our friends and family this year. But, on Friday and Saturday we had family from Houston visit us and we had a really great time with them. We cooked up a turkey dinner Saturday and the turkey actually turned out! Yeah! We even bought a cool injector to keep the meat moist and tasty. Mmm...

Our friends from San Antonio also stopped by to eat with us and brought some cute gifts for the kids.

Sunday morning, Hannah and her cousin Ian made cookies for Santa. If you look closely at her mouth, you can see that they taste-tested as well :) Aren't the cookies masterpieces?

A neighbor even dropped by some hot-chocolate mix, and Jenna and Hannah tried their first sip...

Later on that night, the girls had their bath and donned their Christmas jammies. Don't they look beautiful?

Daddy loves his Christmas music, so we basically had the whole house singing Jesus' praises. The girls loved it.

And below...
Daddy and Hannah tracked Santa on the computer. She was in awe. Santa even gave her a call while daddy was upstairs. Too bad he missed it! :)

Eventually the girls went to sleep (no peeking!) and we got busy! And finally, all snug in bed by 2am...
with a tree surrounded by gifts.

What does it mean?

What’s this about “magic harp strings?” Check out the following poem by Edna St. Vincent Millay:

THE BALLAD OF THE HARP-WEAVER

"SON," said my mother,
When I was knee-high,
"You've need of clothes to cover you,
And not a rag have I.

"There's nothing in the house
To make a boy breeches,
Nor shears to cut a cloth with
Nor thread to take stitches.

"There's nothing in the house
But a loaf-end of rye,
And a harp with a woman's head
Nobody will buy," And she began to cry.
That was in the early fall.
When came the late fall,
"Son," she said, "the sight of you Makes your mother's blood crawl,–
"Little skinny shoulder-blades
Sticking through your clothes!
And where you'll get a jacket from God above knows.
"It's lucky for me, lad,
Your daddy's in the ground,
And can't see the way I let
His son go around!" And she made a queer sound.
That was in the late fall.
When the winter came,
I'd not a pair of breeches Nor a shirt to my name.
I couldn't go to school,
Or out of doors to play.
And all the other little boys Passed our way.
"Son," said my mother,
"Come, climb into my lap,
And I'll chafe your little bones While you take a nap."
And, oh, but we were silly
For half an hour or more,
Me with my long legs Dragging on the floor,
A-rock-rock-rocking
To a mother-goose rhyme!
Oh, but we were happy For half an hour's time!
But there was I, a great boy,
And what would folks say
To hear my mother singing me
To sleep all day, In such a daft way?
Men say the winter
Was bad that year;
Fuel was scarce, And food was dear.
A wind with a wolf's head
Howled about our door,
And we burned up the chairs And sat upon the floor.
All that was left us
Was a chair we couldn't break,
And the harp with a woman's head
Nobody would take, For song or pity's sake.
The night before Christmas
I cried with the cold,
I cried myself to sleep Like a two-year-old.
And in the deep night
I felt my mother rise,
And stare down upon me With love in her eyes.
I saw my mother sitting
On the one good chair,
A light falling on her From I couldn't tell where,
Looking nineteen,
And not a day older,
And the harp with a woman's head Leaned against her shoulder.
Her thin fingers, moving
In the thin, tall strings,
Were weav-weav-weaving Wonderful things.
Many bright threads,
From where I couldn't see,
Were running through the harp-strings
Rapidly,

And gold threads whistling
Through my mother's hand.
I saw the web grow, And the pattern expand.
She wove a child's jacket,
And when it was done
She laid it on the floor And wove another one.
She wove a red cloak
So regal to see,
"She's made it for a king's son,"
I said, "and not for me."
But I knew it was for me.
She wove a pair of breeches
Quicker than that!
She wove a pair of boots And a little cocked hat.
She wove a pair of mittens,
She wove a little blouse,
She wove all night In the still, cold house.
She sang as she worked,
And the harp-strings spoke;
Her voice never faltered,
And the thread never broke. And when I awoke,–
There sat my mother
With the harp against her shoulder
Looking nineteen And not a day older,
A smile about her lips,
And a light about her head,
And her hands in the harp-strings Frozen dead.
And piled up beside her
And toppling to the skies,
Were the clothes of a king's son,
Just my size.
(found at http://digital.library.upenn.edu/women/millay/ballad/ballad.html)

I loved reading this poem.

To a child, there’s no limit to what a mother’s love can accomplish. It’s magical. Sometimes I'm over-critical of myself and second-guess the job I'm doing as a mother, but I love my kids so much and they feel that love, I know it. It comforts them. And that makes all the difference in the world.

How Brilliant!

What to write for my first post? I keep telling myself that whatever I write here must be brilliant. As if I'm brilliant! Well, time to let go of the OBSESSIVE/PERFECTIONIST part of my personality and JUST WRITE already!

The truth is, I've had a long day. Well, actually, before that I had a long night. Cohen is nursing and like every baby with a tiny stomach, he thinks he's hungry all the time. And his love for milk is beginning to show - boy, is he getting pudgy!

Isn't he adorable?! Baby pudgy is cheek-pinching cute; mommy pudgy - not so cute! More on that later...

After waking up before the sun and getting Jenna off to school, I sat down to serve up yet another hearty meal for my adorable little butterball. I had high hopes of sneaking in some shut-eye before Hannah woke up - my plans never seem to work out anymore! So, all awake and accounted for by 7am. I made it to Target to get some last-minute favors for Jenna's holiday party gift bags at school, then took both little ones with me to partake in the festivities. Sound difficult? Not so much. They loved it. Jenna, on the other hand, was ready to leave soon after our arrival. Oh, well. Jenna doesn't really like parties. Not even her own.

So I get all three kiddos out to the car safely *whew!* and together we make it home in one piece. I have been here, at home, ever since. Sound peaceful? Think again. The fun doesn't end there. Hannah decided to take her diaper off - twice! - and was even kind enough to include a gift for me - BOTH times! Potty training, anyone? In addition, Jenna was having issues walking on her right leg and foot. She kept falling into the walls and tripping over, well, nothing at all. I think she was having little seizures. Poor girl. Trying to get her to take a nap was like pulling teeth (or even just brushing them at this point). It's been a long week so far, and what day is this? Wednesday?!

Alas, Cohen is happily swinging away, belly full, Daddy's reading a story to Hannah, and Jenna's watching "Rainbow" (Wizard of Oz). *sigh* How long will it last?